Tag Archives: Assumptions

“All Kids Do That.”

Kiddo’s Mom over at Autism with a Side of Fries wrote an interesting post titled “All Kids Do That”. The comment that “all kids” do something, is meant to reassure parents of disabled children, or disabled children themselves, that they aren’t all that different. I remember when I was around eighteen, my parents told me that 99% of my schoolmates had the exact same problems I did. I wasn’t different, except for being above-average intelligent (which, given that I went to grammar school, 99% of my schoolmates were, too). And oh sure, I was blind. Maybe that, or my reaction to it, explained all my oddities. Or maybe not.

The thing is, it doesn’t help a parent to hear that they shouldn’t worry about something they know is not typical. It doesn’t help a disabled teen, either. Of course, everyone has some quirks, but most likely you do not know that the disabled child whom or whose parents you try to reassure has many more problems than the behavior you’re currently seeing.

Also, you do not realize how much effort it takes for a disabled child to appear more or less typical. As Kiddo’s Mom says, it took lots of therapy for her son to be able to eat properly, swim or sing. Hopefully, Kiddo’s Mom delights in these results, but it isn’t your job as a stranger to callously assume Kiddo isn’t “really” autistic (or not “that severely autistic”) because he acts so appropriately. Kiddo’s Mom likely doesn’t even realize how much effort Kiddo pours into it, as my parents or staff don’t realize this in my case. Certainly you, being the family friend or relative, or even a complete stranger, do not know.

It is easy to assume that a disabled person isn’t “really” disabled, or isn’t as disabled as they or their parents claim to be, by observing a single behavior. I’ve been told countless times that I should stop posting about my self-care difficulties and meltdowns because I’m not like the commenter’s child, simply because I can write. Sure, there are difficulties that aren’t due to my disabilities at all. My inability to come up with some words in English is more attributable to my being a non-native than to any of my disabilities, and even native speakers of English sometimes have trouble coming up with words.

A disabled person is a person, too. Like Kiddo’s Mom says, sometimes parents of typical kids are slightly shocked when she says Kiddo does something their kids do, too. The underlying assumption is tht a disabled child’s every behavior should be related to their disability. In reality, it isn’t. I am disabled, but I am more than my disabilities. Just because “all kids do that”, doesn’t make me non-disabled, and just because I do something your typical relative does too, doesn’t mean they’re acting like a disabled person.

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Disability and Childlessness: It’s Complicated

I am disabled. I am childless. For a long while, I identified as childless by choice. In a way, it is a choice, because I do not experience reproductive problems that I know of. In another way, it’s not a choice, because I would’ve wanted to be a parent. I’m not “childfree”. I am disabled, and this has influenced my decision to remain childless. That doesn’t make it not a decision, but it makes the decision tougher than had I truly been childfree.

On Musings of an Aspie, there’s a post on honoring your choices as an autistic woman (or man). It is a postscript to the autistic motherhood series on the Autism Women’s Network. The post concludes that older autistic parents have a responsibility to share what they’ve learned with the younger generation of autistics. This, in my opinion, goes for autistic childless people too. As autistics, we often feel left out, and it’s important to have people whose experiences we can relate to who are older than us and can share with us what they’ve learned. Likewise, we need to be mentoring the even younger generations.

I find it extremely hard to connect to people with whom I have enough in common that we can share our knwoledge and experiences and support each other this way. This may be because I have multiple disabilities. The Internet has opened a world for me, but when, with this current blog, I began to spread my wings outside of the disability blogosphere, it also amplified my differences. It may be just me, but I see Mom bloggers everywhere.

Childlessness, like disability, is a minority status. And now that childlessness is no longer the only way for disabled women, it adds up to someone’s otherness. I’m not saying that childlessness should be the norm again for disabled women. What I do want to say is that it’s still a reality for a lot of disabled women (and men), and that it’s often still a painful reality that is complicated by prejudice and stimma both surrounding disability and childlessness. I do understand that the assumption that disabled people are childless by default, needs to be challenged, but this assumption should not be replaced with additional stigma for the person who finds their disability actually does make it impossible for them to become a parent.

Diagnonsense: Blindness and Autism

Today was treatment plan review time again. This inevitabley means that my diagnosis needs to be reviewed too. Last September, this meant a change of diagnosis from dissociative identity disorder and PTSD to borderline personality disorder. I also have a diagnosis of autistic spectrum disorder or Asperger’s depending on which professional you ask. The details of this diagnosis – whether it’s Asperger’s, autism spectrum disorder, or something else along the spectrum entirely -, don’t bother me. What does bother me is the constant questioning about whether I truly am autistic or all my difficulties are normal for someone who is blind.

I have read a fair amount of information on this, and it is true that blind and autistic people display overlapping behaviors. For example, many blind children (but not most adults) flick their fingers in front of their eyes or rock back and forth. These “blindisms” are also common in autistic people. Blind people also can’t use visual cues to communicate. This led my therapist to assume that all blind people are clueless about for example sarcasm used in speech. Generally, it is recommended that the criterion on non-verbal commnication be left out of the equation when deciding whether someone who is blind meets the criteria for an ASD.

I don’t care about this single criterion as it isn’t the only one in the diagnostic manual. What I do care about, is when underlying mechanisms of autism are attributed to all blind people. For example, my therapist said that all blind people have trouble keeping sight of the big picture. This may be so to a certain extent, in that all blind people again miss visual cues, but it isn’t like all blind people have no clue how to generalize daily living skills from the training facility or parental home to the independent living situation. My support worker, who had extensive experience with blind people, told me when I moved into independent living from her training home that I could obviously clean my apartment, as “a bathroom is a bathroom”, etc. To me, it certainly isn’t. Similarly, most blind people beyond early childhood don’t get overwhelmed by noise. This again led to a horrible misunderstanding when I, early in my independent living experienece, had a meltdown over a fire truck driving by.

Now I don’t care what my diagnosis is as long as I get the right support, but this is exactly where questioning my autism diagnosis is problematic. People with only a mobility or sensory impairment cannot get support. They can get a housekeeper, but they can’t get anyone to help them organize their lives or navigate social or practical situations.

A general rule is that, if normal strategies for the blind do not work, there has to be something else going on. I’ve lived in enough facilities for the blind to know my behavior clealry isn’t normal for a blind person. In fact, it was the staff at the training home who first sought an autism evaluation for me. They didn’t seek this for all their clients. In the end, my current therapist also left the diagnosis untouched, but I get sick and tired of constantly having my needs questined. Of course, I know I truly have “preemie syndrome”, a constellation of neurodevelopmental problems commonly associated with premature birth, but this isn’t a formal diagnosis and won’t ever be one.

I Am Astrid’s Functioning Label

Back in 2008, Bev over at Square 8 wrote a post entitled I Am Joe’s Functioning Label. The post struck a chord with me right the first time I read it, and, over the years, it has become more relevant. For those who don’t want to hop over to read the post, it’s about what the label “high-functioning” is perceived to say about an autistic person, and how this impacts the way autistics are treated.

For clartiy’s sake: I am not saying that people with an intellectual disability have it easy. The cuts to care and the accompanying independence doctrine affect them too. What I do mean is that it is often easier to understand why a person with an intellectual disability needs care than if you have a high IQ.

It is often presumed that a person who can do a cognitively challenging task like operate a computer, can also do more basic tasks like brush their teeth. In reality, these skills have nothing to do with each other. Another assumption is that people who know how to perform a task and/or why it’s necessary, can also perform that task. I remember even years before Bev’s post reading on Autistics.org about a woman who was getting ulcers beecause social services presumed that if she knew about hygiene, she must be albe to wash herself.

There are many more assumptions about people labeled high-functioning. Here are a few that are affecting my life.


  1. Because of my functioning label, I am presumed to be safe in traffic. Since starting to learn a tiny route around the building, I am not only allowed to leave the ward alone without any purpose, but am expected to leave the ward if I’m angry.

  2. Because of my functioning label, I am presumed to be able to take care of my personal hygiene without reminders or help. This is in a way somehting I don’t want to change, because the reason I’m not able to perform some skills of personal care is because of sensory issues.

  3. Because of my functioning label, I am presumed to know how to solve problems myself even when anxious or overloaded (my fuctioning label dictates that overload is just an excuse to avoid demands). I am presumed to be able to make my needs known in very specific terms.

  4. Because of my functioning label, I am thought to be able to perform practical skills like making a bed or pouring coffee myself. Ironically, the motor deficits which cause me to be unable to perform these tass, were originally thought to be especially common in Asperger’s Syndrome.

  5. Because of my functioning label, I apparently don’t need a lot of structure. This means I am presumed to be able ot schedule activities without help.

  6. If I get overloaded, my functioning label dictates that it was my own choice and I’m depriving other people of the right to make noise.

  7. If I have a meltdown because my routine is interrupted, again, my functioning label dictates that I’m just spoiled and trying to always get my way.

  8. Because of my functioning label, I am presumed not to engage in aggressive or self-injurious behavior. If I do, it’s obviously because of BPD-related attention-seeking.


Yes, I see that a lot of these assumptions are not just based on my functioning label, but also on my co-occurring diagnosis of BPD. Before I had this diagnosis, not only was I not presumed to be unwilling to act normally, but my autism was presumed not to be as mild as it is now. Hence, an additional diagnosis makes it seem as though I’m less severely affected. Isn’t that ironic? By the way, if instead of Asperger’s and BPD, my diagnosis had been multiple complex developmental disorder (McDD), which is characterized by practically the same symptoms, I would likely have been seen as quite severely autistic.